Trust, with Orthostatic Tremor

Trust is a word that seems to get thrown around quite a bit. “I don’t trust the way he’s looking at me.” “I don’t know what it is, but I just don’t trust him.” We have trust issues with our family, with our friends, with the world around us. The older you get the more people you are exposed to, the more you have to decide who to trust or not. Your boss, your coworkers, your doctor, your therapist, your lawyer, even your priest, minister, pastor, Rabbi, etc….

When you have a disease that is a rare as OT, trust becomes exponentially important. First, your primary doctor has probably never heard of OT. 70-80% of Neurologists have never had a patient with OT. The ones that have certainly had no idea of a cure or very little ability to help the symptoms. Because it’s so rare, very little if any research money goes towards OT. When my Neurologist, who actually has 3 patients with OT, goes to a conference and the only research group is one from Florida who tested magnetic therapy on a study group size of less than 25, which some of you were involved in, comes back from it and basically says you’re screwed! There’s just no money to be made because of the limited sample sizes. That’s one of the reasons I like and trust my Neurologist. He gives me straight answers, is willing to try anything and work with anyone who may have information. Me being a Pharmacist has led to some interesting combinations and dosages…none that have really worked significantly for the tremors.

So who do you trust? Do you trust the population that really can’t tell you have a very debilitating disease unless they look very hard? Do you trust employers who blow off your illness when a chair, stool or even something to lean on helps? Do you trust insurance companies who again have most often never heard of the disease and really have to do some digging to find limited knowledge before they deny a claim? How about a legal system that works at a snail’s pace at sorting through all the “documents and research findings” for a “small” hourly rate?

So, who do you trust? My answer in my very short (1 year), but seemingly lifetime of experience with OT is, I don’t know. It’s very hard to trust anyone who can’t feel the effects of OT on your body or your mind. No offense to anyone at any age, but when someone looks at me, a 41-year-old, 6 foot 3 inch man, in relatively good shape, they most often never give me a second look. That is until they see me standing “still”, or leaning on a wall or grocery cart. I believe that even my family at times gets sick and tired of people asking me how I’m feeling. My family is very supportive, but you know it happens to us all.

The bottom line is that I still have to use my gut feelings to sort out who I trust and pray and hope for better times. The praying in the one pure thing I can trust, because it makes me feel better and I know it will always be there for me to lean on. Let’s hope that those of us able to go to Nebraska later this year will come home with more trust and hope.

Thank you so much for reading, and for sharing my story. I wish a great rest of the week for you, and as always God bless!!

I can understand your trust issues. Especially when you had been given the run around from your employer, insurance companies, and lawyers. Keep your faith and keep moving forward one day at a time. Praying for you and your family, as always. God Bless! ❤️

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